Proposition 54K3230

Projet de loi relative au remboursement des tests diagnostiques et génétiques en cas de mort subite d'un jeune sportif.

General information ¶

Authors

CD&V Nathalie Muylle
Ecolo Sarah Schlitz
Groen Anne Dedry
LE Catherine Fonck
MR Damien Thiéry
N-VA An Capoen, Renate Hufkens, Yoleen Van Camp, Valerie Van Peel, Jan Vercammen
Open Vld Ine Somers

Submission date

July 12, 2018

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

death forensic medicine health policy young person sport

Voting ¶

Voted to adopt

Groen CD&V Vooruit Ecolo LE PS | SP ∉ Open Vld N-VA MR PVDA | PTB VB

Contact form ¶

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Discussion ¶

Feb. 21, 2019 | Plenary session (Chamber of representatives)

Full source

The rapporteurs, Mr Janssens and Mr Piedboeuf, refer to the written report.

At the end of my first and ⁇ some term as a member of Parliament, the Bill No. 3230 to the heart. Given my background as a cardiologist, I am somewhat proud to be able to submit the bill to you for voting. After all, it can be the beginning of improving our understanding of why young athletes die for unclear reasons.

With the regularity of a slow Swiss clock, reports of sudden unexpected deaths among young athletes appear both in our newspapers and on television. It remains a medical mystery why the heart of that one athlete refuses service at that conscious moment.

A heart, dear colleagues, consists of 10 billion heart muscle cells, which work together 100,000 times each day in a synchronous pattern and keep us alive. Nothing seems more obvious until that one fatal moment.

We know from years of observation that good physical condition and regular exercise promote our health and our life expectancy. A sudden death of a well-known athlete, widely smeared, affects that certainty and scares many people.

We know some underlying heart problems that increase the risk of sudden death. However, we also note that carriers of known problems relatively rarely develop cardiac arrest.

However well-intentioned, the screening of young athletes, a competence of the Communities in our divided country, as has just been detailedly illustrated, shows serious deficiencies. We have too many false positive and too many false negative results. In human language, screened people can still fall to death and people who are wrongly labeled "unfit for sport" during a screening are condemned to a life in the seat and to a pathological fear in any physical activity, fear of something that may never happen.

Measurement is knowing, colleagues. Insights into our genetic material, in our DNA, have grown exponentially in recent years. Our country has only a limited tradition in post-mortem research.

Most young athletes who suddenly die await a busy attendance funeral, in cyclists a half sentence on performance enhancement agents and a lot of collateral damage to friends and family members and sporting peers. Many of my older patients again find a reason to put a healthy lifestyle with enough exercise back in the refrigerator.

The present bill aims to change this and reflects another, important social problem more than a decade ago, cattle death. Since in our house here the legislation was changed in 2003, wheat death is systematically investigated. The competent authorities told me last month that in more than 60 % of cases a clear cause of death can now be identified.

It is my wish and that of the applicants that the bill can sort the same effect. When we investigate, we will know. It can therefore also refine the screening of young athletes and lead to a more targeted prevention in certain silent disease conditions or the presence of certain genes or genetic variants.

I can’t estimate the consequences of the bill, just as we can predict the weather for next week, but my hope as a cardiologist is that we can move a stone in the river so that our insight grows and we can come to a more meaningful screening and prevention.

I would like to expressly thank all my colleagues from various political groups for the help and support and the elaboration of the proposal. I would like to thank the colleagues doctors from the various universities who are willing to engage in the implementing decisions. Thank you for the support of the Cabinet and the Minister.

As a departure member of parliament, it is for me the beginning of a new scientifically strong story with a social potential. In a country where we had to budget more than 200 million euros extra for the Department of Public Health last year for the latest anti-cancer treatment, this bill, with which we can prevent cardiac arrest in young sports people and which was budgeted at less than 1 million euros, is actually a purchase.

I thank you for your support.

Mr. Speaker, I would like to thank Jan Vercammen for the work he has done, especially the preparatory work but also all the sources he has been able to obtain with a number of colleagues from the universities.

Sudden death among young athletes is rare, but it is a tragic event. The fact of reimbursing the diagnosis and all the costs associated with these deaths is obviously a huge advance. We know that the budget involvement is not enormous. It is never just justice in relation to families who always ask themselves why these tragic and unexpected deaths occurred on the sports fields. I think this is a breakthrough in the sporting world.

In this context, we could not do otherwise. We should have done this much earlier. That is why we join in this remarkable work. I think the whole committee had the opportunity to speak on the subject, saying that all this was positive for the sporting world.

Mr. Speaker, when we discussed this together for the first time, I was immediately convinced of the absolute necessity of advancing on this matter because these tragic deaths remain an enigma in the majority of cases. Many assumptions can be made, but there is no certainty.

The challenge is obviously not to respond to one or another death occurred in the past but to truly work on protection and try - it will not be as easy as this - to avoid in the future this type of unexpected deaths of young people in the midst of sports practice. This step is important.

Remember, Mr. Vercammen, this KCE report on whether or not to do a systematic cardiac screening in young people who have an advanced sports practice. The questions remain whole but these analyses, autopsies, scientific evaluations of the data collected may also allow us to decide on this point, ⁇ differently from the practices that are being done today.

Finally, it seemed to me important – I had talked about it from the beginning and you agreed – that we remain ⁇ attentive to the respect of the family concerned by the unexpected death of one of their loved ones during an intense physical exercise. I thank my colleague. We will support this text that I co-signed; it is a beautiful initiative based on scientific evidence.